Chronically Genetic

Ever since I can remember I wanted kids. Growing up as an only child I fantasized about having a large family. I envied my friends who had siblings and my cousins who had dozens of cousins themselves. I had two cousins, who I adored then and still do. Also, I am adopted. I think this, in and of itself, ignited a desire to have children. I wanted to look into the face of another and see myself, or even little traces of myself in the form of similar expressions or shared talents. When I thought of having little girls, I pictured them borrowing my clothes; earrings, sweaters and jeans, because I was going to be that cool mom. I don’t think I ever thought I would quite so literally, share my genes with them but, I wasn’t diagnosed with many of my issues until after I had kids. Not that knowing would have changed my mind about having kids, I just would like to think I would be more prepared.

The reason for my writing this particular post is that my 23 year old daughter was just diagnosed with fibromyalgia and may possibly have rheumatoid arthritis too. I had sent her to my rheumatologist because she and I have had similar issues and since learning from my rheumatologist that some of the surgeries I have had may have been unnecessary, I decided it was in her best interest to see the doctor before having any more surgeries herself. When she got home, it was: “Guess what? You have a fibromyalgia buddy!” I can’t express enough my surprise. I really thought, if anything at all, we might share the RA, but not the fibromyalgia. She explained to me that our doctor also believes she has the RA, but of course we have to wait for lab results.

I spent much of the night doing even more research on RA and the gene link. Sadly, while researchers do think that certain genes may increase your risk of RA, they also don’t consider RA to be a genetic disorder meaning, geneticists can’t calculate your risk of developing RA based on your family history. The story isn’t much different for fibromyalgia. While research so far concludes that fibromyalgia isn’t passed from parents to children, the odds of developing fibromyalgia is much higher in immediate families of people with fibromyalgia than in families without any history of fibromyalgia. The remaining part of my sleepless, evening entailed a growing frustration over how these two illnesses manifest themselves. Primarily, in regards to fibromyalgia because, insomuch as what I have learned, what precipitates this is trauma of some kind (physical or emotional) or an infection. There is no trauma that readily comes to mind, that I can say “Yes! This must be what caused it.” Likewise, there is no illness that comes to mind as a trigger for fibromyalgia. In looking at my own life, I have had both trauma and infection that I could choose from as culprit for this illness and so for my daughter, all I can come up with is hereditary.

In some ways I wish genetics had nothing to do with it because I feel like I am somehow responsible for it. In other ways I hope it is genetic because, if the medical community can look into families with a history of fibromyalgia, maybe it will help in the development of a cure for it or at least an effective medicine. I know many other disease/illness studies have benefited from being able to trace family history and the hereditary nature of it. At the same time I don’t think it should take something like hereditary to bring awareness to a certain disease, however I do know that unless there is awareness people do not like to open their purse’s to donate unless they have certain facts and I certainly don’t have hard feelings about it because none of us can afford to give even small amounts, to every organization in need of it.

As for RA, it seems gene factors account for 50% of the risk in developing RA though the cause of RA is still, ultimately unknown. Everything from genetic, hormonal, immunologic and infectious factors may play a role. Too, it would seem that socioeconomic, psychological, and lifestyle factors such as tobacco use, may have an influence in the development of the disease as well as the progression. I really hope that there is an eventual concrete cause for this disease. Though I am at a loss as to between RA and fibromyalgia, which might be the worst, they both deserve more research and more funding.

I hope my daughter has a better outcome. I think that even if the biologics work to manage my RA that there has been significant damage done already and because I still have the fibromyalgia, which there is not only no known cure, but no known effective treatment that works for everyone, that the future doesn’t look as bright. I’ve already watched while these illnesses have stolen a tremendous amount of my life from me; I am not prepared at all to watch it steal things away from my daughter while she is still so young and vibrant. There are many young men and women who have one or both of these illnesses. I think they are remarkable and brave for pushing past it and going on with their lives. I think it is natural for me not to want my daughter to live in pain, but I do know for a fact that she would not let it stop her either and she hasn’t.

I know that I did not give this to my daughter, or any of my daughters, in the event more of them develop this too. I simply feel that as a mother you bear a certain amount of guilt when your child gets sick or develops an illness such as these, where it is likely to affect them for the rest of their life. Also, there is the inherent desire to protect your children from all bad things. I know it’s not rational, but children are the most important and precious thing we have in our lives.

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